Making progress towards diverse medical research: A Q&A with the National Minority Health Association
Gaining insight into medical conditions is what clinical trials are all about, but the data acquired is inevitably specific to the study participants — and in many cases, this means that racial and ethnic minorities are underrepresented in the results. Conducting medical studies is vital to discovering new therapies for conditions, but to do this effectively, researchers must ensure that their trial participants accurately reflect the patient population.
To understand the current progress being made toward diversity in medical research, we chatted with Burgess Harrison, Executive Director for the National Minority Health Association (NMHA). Check out our Q&A session below to learn more about the important work the NMHA is doing and what the status of diversity in medical research is as a whole.
Why are diversity and health equity still a question?
With articles such as “Why Diversity in Health Research Is Good Science And Good Business” and many similar publications, one can and should wonder why diversity and health equity are even still topics of discussion. One would think that with diversity and health equity being front-and-center issues that almost every major corporation has included in their going-forward strategies, there would no longer be any question about the need for diversity, and every business would be changing their business practices to ensure health equity in every way possible. Unfortunately, this is far from the current situation. Many companies talk a good game, but in the end, little actually gets done and change is slow at best.
The problem is that so many of our systems, businesses, and governmental entities have institutionalized racism, and engrained it so deeply that it is no longer apparent or easily fixed. For example, the FDA recently issued guidance calling for diversity in clinical trials, even though they have had the authority for many years to approve or deny new drugs based on any number of factors (including trial diversity). This “oversight” has resulted in drugs and medical devices being approved, then later determined to lack efficacy for one or more minority or underserved populations. The most recent example is the pulse oximeter, a device that has become a standard of care in the medical industry yet is up to 12% less reliable when used with people of color.
To address the issues of diversity and health equity, we must first address the systemic racism built into almost every established pillar of society. This will require companies to introspectively examine every aspect of their business model with an eye toward identifying those aspects that are or may be discriminatory, then determining how best to remove them from day-to-day operations.
To date, many companies have taken the initial step of putting Diversity, Equity, and Inclusion executives in place to evaluate and make recommendations. The next step will be to enact those recommendations, measure the results, and tie executive compensation to the attainment of diversity. When that happens, it is likely that diversity and health equity will slowly but surely be realized by all.
Why is it important to focus on diversity in medical research?
This is just common sense. According to a recent Forbes article, “Focusing on enhancing diversity, equity, and inclusion in health research can improve the quality, accuracy, and usefulness of research data while cutting costs associated with finding and retaining participants.”
If a pharmaceutical company wants their new medication to be used by as many people as possible, they must generalize their clinical trials across a population reflective of the people for whom the drug is intended. This is more than just “good business.” It can’t just be assumed that if a drug works for white men it can work and be as effective for black, Hispanic, or Asian women, for example.
Why is this even a question in 2022? Because the FDA has only recently come to the same conclusion and now demands that for general approval a clinical trial for a drug MUST reflect the population for which it is intended.
What are the biggest health issues to be addressed in communities of color?
It’s hard to pick one issue. The Kaiser Family Foundation finds that Black, Hispanic, and AIAN (American Indian/Alaska Native) people fare worse than White people across the majority of examined measures. For example, maternal mortality for black and brown women in America in 2022 shouldn’t be an issue but it is.
But the real question is: Why do these disparities exist at all? The answers relate back to the clinical trials that validated the drugs. By and large, most trial participants were middle-aged white males, so the efficacy of many drugs was based on the response of this one group. Once approved, these drugs have different effects, impacts, and efficacy on non-middle-aged, non-white people.
When this is coupled with the social determinants of health such as larger households, more public-facing jobs, fewer healthcare resources, less access to state-of-the-art treatments, and a smaller population of doctors per capita, it is not surprising that health disparities exist. While they have been here all along, through the latest analyses of big data, new techniques for data modeling, and predictive modeling, we are only now beginning to see how disparate healthcare truly is and the degree to which institutional racism exists.
What steps is the NMHA taking to engage underrepresented communities to improve health outcomes?
Health equity is about 1) awareness, 2) access, and 3) means. The NMHA works diligently to engage minority and underserved communities to make them aware of healthcare resources and to ensure they have access to those resources, along with the means to utilize them. The NMHA started this effort with a grassroots PSA about the COVID vaccine to combat the hesitancy in underserved and minority communities. Our aim was to address the gap in the early days of the pandemic between the vaccination rates for communities of color as compared to white communities.
To answer the question of what the NMHA is doing now, stay tuned for several new programs that will raise awareness of health equity and foster higher levels of engagement on the topic within corporate America. Also, look for NMHA to work more closely with the pharma industry to address diversity in clinical trials. Rest assured, we will keep a spotlight on the issue and the importance of diversity.
How did COVID-19 impact existing healthcare disparities? Can you share a bit about your vaccination efforts?
The NMHA was awarded an $11.1 million grant from the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, to broaden our efforts and focus on twelve states to increase vaccinations within underserved communities. Partnering with the home health industry, the National Association for Home Care and Hospice, Homecare Association of America, and nearly 2,000 provider agencies and their workers, the NMHA spread the word, provided education and information, and busted many of the myths that helped to cause confusion and hesitation.
This initiative, called the Flex for Checks program, has been responsible for over 69,000 shots in arms across every state in the US since August of 2021. Its efforts included social media campaigns that garnered millions of engagements. The NMHA partnered with Dr. Ian Smith as its medical spokesperson who, through social media, TV, podcasts, etc., helped dispel myths and inaccuracies about the vaccine. Home health partners disseminated information to their home care workforces and subsequently to their patients and families. HRSA told the NMHA that its grant is one of their most innovative. The NMHA combined education, social media, rewards, and tools coupled with a unique industry partnership with trusted messengers in home health. Fast forward to today, according to a recent New York Times article, COVID’s racial gaps have flipped.
What is NMHA doing to educate the community about the importance of medical research and participating in clinical trials?
As an outgrowth of our Flex for Checks HRSA grant program, the NMHA provided significant training and education to combat the vast amount of misinformation and myths that helped to cause vaccine hesitancy. We continue that effort today as we ramp up resources and education for underserved and minority populations about clinical trials.
The NMHA takes a holistic approach going well beyond recruitment for clinical trials. We are looking to build relationships with our members (now 70,000+) and provide them a comprehensive path to health equity, which will include a focus on clinical trials. Our approach, however, is to view people as people and not patients. We applaud and support the current focus on diversity but not to the detriment of people of color.
For too long, there has been a lot of talk about diversity, equity, inclusion, and health equity, with little action behind the rhetoric. Until businesses understand that beliefs are changing, and inclusion is becoming more prevalent, nothing can improve. As we all go forward it is incumbent upon every person to strive for health equity, look for the areas where each of us can make a difference, and be a part of the solution and not a part of the problem.
If you would like to learn more about how Antidote can help you focus on diversity in your clinical trial recruitment, get in touch with us today to learn more.